The story of Jade
Jade started showing symptoms something was wrong at 3 months old. One of the signs was crying whenever she was in the light. After being dismissed by many doctors as they couldn’t see anything wrong finally we saw a doctor who referred us to a paediatric Opthamologist who immediately diagnosed her with glaucoma. After many months and little relief we were just lucky enough to cross the path of Prof John Grigg who had seen the rare disease Juvenile Xanthogranuloma (JXG) before. Prof Grigg tried everything to save Jades eye. She had some moments of relief but the damage done to the eye lead to periods when Jade suffered extreme light sensitivity, despite a wide brimmed hat and specialised dark sunglasses she sometimes needed to use a cane. And at its worst she spent months in total darkness, we taped the block out curtains to the floor to stop any light from entering and she listened yo audio books in the dark. Finally at 12 years old she made the brave decision to have the eye removed. We sometimes wonder if more was known about this disease if she would have been able to be treated earlier and save her lifetime of pain and loss of her eye.